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Old 01-15-2017, 10:49 PM   #41
ScottSuff
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Blog Update
Scottsuf.blogspot.com
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eds195 (01-16-2017), soccertese (01-16-2017)
Old 01-17-2017, 04:48 AM   #42
bluesking
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Scott - I saw your blog for the 1st time yesterday. Apparently I
repeatedly hosed my URL entry attempts.

I think I may have a suggestion or two when they get everything
straightened out for 'round 2.'

I can't remember exactly what they set the initial voltage to from
the factory. For purposes of discussion, let's say it's 1.5. In my
case, the value is currently at 3.2.

Scott, if you can convince them to let you leave the hospital with
an adequate 'ceiling' meaning that you can 'bump' up the settings
yourself, instead of waiting for your next 'adjustment,' as I was
forced to do, you can save yourself much grief.

For example, based on their advice, and personal trial and error,
if I had been able to do so, I would have increased the setting
by 2.0 each day, until sensing significant relief. I think you are
already aware that any such sensation is short-lived, or at least
it was for me. It usually 'healed' in 2 weeks or so, leaving me
quite miserable for the next 2 weeks, until my next appt.


David
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Old 01-17-2017, 09:16 AM   #43
soccertese
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Default scott, a starting point for reducing surgery infections

15 Ways To Reduce Your Risk Of Hospital Infection

much easier said than done when if you ask questions or make demands to people who are highly trained but mistakes are made and surgeons/nurses have bad days sometimes.

boy, if you have a friend who is a surgical nurse ask her for some advice.

i was lucky that a person i was sitting next to in the neurology clinic happened to have worked as a surgical nurse for the neurosurgeon who was assigned my DBS operation and she raved about him.

it's your life and pocketbook.. best of luck.
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Old 01-17-2017, 02:16 PM   #44
ScottSuff
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Quote:
Originally Posted by bluesking View Post
Scott - I saw your blog for the 1st time yesterday. Apparently I
repeatedly hosed my URL entry attempts.

I think I may have a suggestion or two when they get everything
straightened out for 'round 2.'

I can't remember exactly what they set the initial voltage to from
the factory. For purposes of discussion, let's say it's 1.5. In my
case, the value is currently at 3.2.

Scott, if you can convince them to let you leave the hospital with
an adequate 'ceiling' meaning that you can 'bump' up the settings
yourself, instead of waiting for your next 'adjustment,' as I was
forced to do, you can save yourself much grief.

For example, based on their advice, and personal trial and error,
if I had been able to do so, I would have increased the setting
by 2.0 each day, until sensing significant relief. I think you are
already aware that any such sensation is short-lived, or at least
it was for me. It usually 'healed' in 2 weeks or so, leaving Med
quite miserable for the next 2 weeks, until my next appt.


David
David,
I had been through the turn/initial programming before infection was found,and they were going to let me have some range in the settings to adjust.
Appreciate it
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Old 01-17-2017, 02:19 PM   #45
ScottSuff
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Quote:
Originally Posted by soccertese View Post
15 Ways To Reduce Your Risk Of Hospital Infection

much easier said than done when if you ask questions or make demands to people who are highly trained but mistakes are made and surgeons/nurses have bad days sometimes.

boy, if you have a friend who is a surgical nurse ask her for some advice.

i was lucky that a person i was sitting next to in the neurology clinic happened to have worked as a surgical nurse for the neurosurgeon who was assigned my DBS operation and she raved about him.

it's your life and pocketbook.. best of luck.
I think about all of these steps was performed. Just wasn't my day.
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Old 01-18-2017, 09:14 AM   #46
rainbow676
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Default thanks & best wishes to ScottSuff

Dear Scott - thanks for your experience with DBS. As the daughter of a PD patient who is cautiously considering the procedure, learning about your experiences has been very helpful. Very sorry to learn of your setback and sending you best wishes for a quick resolution.
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Looking for different options for my mom, born 1946 and dX with PD in 2010.
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Old 01-20-2017, 06:22 AM   #47
bluesking
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Default Please Advise - When Will It End

Guys & gals - I am concerned - I don't have any idea how long
or far this will go on.....

Right now the electronic box in my chest is set at 3.3, I think

There has been a 'cycle' of sorts that results in substantial relief,
temporarily, each time the doc raises the voltage setting by .1
or .2. My concern is how long will this go on before I run out of
'room' (I understand that the overall limitation on the Medtronic
unit is 10.5).

I mean, at this rate, I'm going through a .4 - .5 increment each
month, or 2-3 weeks, just to get relief of the minimal sort.


Thanks -
David
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Old 01-20-2017, 07:07 AM   #48
TexasTom
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Quote:
Originally Posted by bluesking View Post
Guys & gals - I am concerned - I don't have any idea how long
or far this will go on.....

Right now the electronic box in my chest is set at 3.3, I think

There has been a 'cycle' of sorts that results in substantial relief,
temporarily, each time the doc raises the voltage setting by .1
or .2. My concern is how long will this go on before I run out of
'room' (I understand that the overall limitation on the Medtronic
unit is 10.5).

I mean, at this rate, I'm going through a .4 - .5 increment each
month, or 2-3 weeks, just to get relief of the minimal sort.


Thanks -
David
David -- A great person to ask is Dr Okun over on the Parkinson.org forums

Attended a Medtronics meeting, and went over my settings, frequency, pulse width, impedance. Current settings I'm good for five years of battery life.

DBS Battery Estimator >> Center for Movement Disorders and Neurorestoration >> College of Medicine >> University of Florida

In 2010 is when the Activia Line came out. Titanium Case, so EMI is not an issue like earlier generations. So I can use arc welding and TIG welding. Ya!

Group meeting, so had chance to talk with someone else, retired M.D. who has Parkinsons and was also dealing with Gastroparesis Thankfully when he was first hospitalized a Neurologist realized it was due to Parkinsons, and he responded to Sinemet, saving him from a J tube surgery.

Scott -- sending you wishes for all the best.
__________________
Born 1958. Diagnosed PD 2014.
Meds Sept 2016: 5x daily: 2 - Sinemet 25/100 + 200mg Comtan; 50/200 ER Sinement (bedtime).
Oct 2016 - DBS - bilateral GPi (PD & Dystonia). Still a work in progress. (Reduced meds to 4 - 25/100 & 50/200 ER Bedtime daily; but need six months to see how DBS/Meds play out)
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Old 01-20-2017, 02:25 PM   #49
bluesking
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Default

Scott - Thanks for the info. All this stuff is so confusing I probably
didn't do a very good job of asking the right question.

I think the current box has a ceiling of 10.5.

I'm currently set to 3.3. Not really concerned about battery life.

What I am concerned about, and if someone could tell me why I
shouldn't be, that would help a lot!

Is - With an adjustment appt. approx. once a month, and with the
typical increase of .2 for each appt., it appears that I would be 'bumping
up' against 10.5 very quickly. Surely they're assuming that most people
wouldn't need an increase close to the above for every month of the year??
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Old 01-20-2017, 04:00 PM   #50
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Quote:
Originally Posted by bluesking View Post
Scott - Thanks for the info. All this stuff is so confusing I probably
didn't do a very good job of asking the right question.

I think the current box has a ceiling of 10.5.

I'm currently set to 3.3. Not really concerned about battery life.

What I am concerned about, and if someone could tell me why I
shouldn't be, that would help a lot!

Is - With an adjustment appt. approx. once a month, and with the
typical increase of .2 for each appt., it appears that I would be 'bumping
up' against 10.5 very quickly. Surely they're assuming that most people
wouldn't need an increase close to the above for every month of the year??
Hi David,
Perhaps get neurologist to give you a range you can use and that isn't too great that you can get into too much trouble with?
I think D.I.Y. is a much gentler and far more convenient way to go.
I might go up but only by 0.1V at a time then give that setting a few days to notice any changes as thats how long it often takes.
Then you might want to try 0.1V up or even find you were better off on the setting you had it on and go back to what it was.
I doubt the settings will go up a great deal more as too high can mess with you mentally as well as cause you to physically feel worse.
I agree with you about battery life the main thing is that you benefit from it.
Good luck
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